Tag: Resource Network

Rare Disease Foundation Parent 2 Parent Resource Network paddling together with Power 2 Be in Victoria! Last weekend the Victoria P2P Network hosted an amazing event that got kids and parents out in a canoe for the first time ever! Power To Be rigged up some awesome adaptive equipment to get those with intense needs…

It is with great excitement that we are announcing our Edmonton Parent 2 Parent Resource Network this September! CTV Edmonton was on hand to interview 3 of our Edmonton families to learn more! Our dedicated group of Edmonton volunteers are working hard to make the reality of a cross-disease family Resource Network happen. A kick-off…

The Rare Disease Foundation In partnership with its Resource Network volunteers, a variety of community partners and through the sponsorship of Shire Canada, the Rare Disease Foundation is excited to announce seven separate Rare Disease Day celebrations across Canada. Each event is an expression of a local rare disease community and reflects the connections between…

From Calgary ShawTV: ‘A Calgary mom is working to form a support network for parents of kids with rare diseases.’ Calgary mom, Rachel Martens, is helping to connect the Calgary rare disease community by organizing Calgary’s Rare Disease Foundation Parent Resource Network. Isabel Jordan

Please help a student achieve their Masters Degree while at the same time support the growth & development of the Rare Disease Foundation! You are invited to be part of a research project that is part of a student’s requirement for a Master’s Degree in Leadership, at Royal Roads University. At the same time, the…

A patient rally for a rare disease drug plan during the intergovernmental Health Ministers meeting due to the unfulfilled 2005 promise to enact a plan. CALLING ALL RARE DISEASE PATIENT ADVOCATES Join the Patient Rally for a Rare Disease Drug Plan during the FPT Health Ministers Meeting Jan 19-21 in Vancouver! There is an unfulfilled…

Parent 2 Parent Resource Networks Launching in Alberta and Newfoundland. Our network for connecting families at a local level is growing. Thanks to dedicated parents and committed health care volunteers, we are excited to announce the launch this month of two new Parent 2 Parent Resource Networks; one in Calgary, Alberta and one in St….

Erin McPhee / North Shore News North Van couple inspired by child’s strength following rare disease diagnosis – This spring, there’s nothing that makes four-year-old Nico Kline happier than riding around outside his Lynn Valley home on his push tricycle. For his parents, Marcela and Derek, there’s nothing that makes them happier than watching their…

By Annie Ellison The Squamish Reporter Published: Dec 12, 2013 Isabel Jordan is a full time mom – but her job description is vastly different from almost any other stay-at-home parent. Her twelve-year-old son, Zachary Jordan, has a rare genetic disease that’s still undiagnosed by doctors. Isabel Jordan is a full time mom – but…

Save the date: November 16, 9:30 AM-2 PM, 312 Parkdale Ave, Ottawa. Registration details will be posted shortly. “How do we support our well-children” is a question that comes up frequently at the Rare Disease Foundation Parent 2 Parent Resource Network meetings. Parents are aware that their child who has additional medical and developmental needs…